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diagnostic conundrum, any similar experiences?

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Crohn's Disease
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Posted 4/20/2008 8:11 PM (GMT 0)
what is wrong with me?

i've had symptoms of D and burning abd pain for 18 months, as well as fissures that come and go.

a ct scan showed colon/ti thickening typically associated with crohns.

crp was elevated.

but:

2 c-scopes. one negative (while on roids), the other with "mild non-specific inflammation".

pill cam - negative (done 3 weeks after roid taper)

promethius serology - negative (at start of sx 18 mths ago)

the symptoms have steadily been coming back over last 3 months since finishing the 9 weeks of pred. slowly, but steadily and with night sweats and fatigue, and they are seeming to slowly crescendo, as they did last fall.

i know ive got it. the fissures, ct scan, and high crp dont lie. gi doc thinks i probably have it too, hasn't really suggested a next step though.

im taking probiotics and fish-oil, wanting to start asacol or roids again!

its hard to know what to do next. . . just wait until i start pooping blood or obstruct? ugh.. . the way things are going, that doesnt seem far off. anyone with similar experience? advice?

Posted 4/20/2008 9:13 PM (GMT 0)
It's a hard disease to diagnose, especially if you have beenon roids, which could suppress the obvious inflammation. Some people have mild to moderate diease andnever progress to obstructions, etc. I thik I'dbe talking to the G|I and ask if he thinks you have CD, what about getting on some maintenance meds to keep it at a low level? Sadly you see a lot of posts on here like yours -- symptoms over time, some telltale lab or scope results, but not enough definitive evidenceto say yes this it is.

Posted 4/20/2008 9:18 PM (GMT 0)
Is anything showing up on a small bowel follow thru?
Posted 4/20/2008 10:03 PM (GMT 0)
no sbft, but capsule endoscopy was bland, or so im told.
Posted 4/21/2008 1:43 AM (GMT 0)
I wish doctors would treat patients instead of lab and test values.
Posted 4/21/2008 2:29 AM (GMT 0)
This shows that a patients history is just as/if not more, valuable as all the fraking tests they put us through.
From your description, you are probably a club member here. But for some reason ( insurance??) docs have become reluctant to dx CD in the last few years.

Sincerely,
Matthew
Posted 4/21/2008 2:41 AM (GMT 0)
Hello Poobah,

Is your Dr really experienced with CD?? I suggest you get a second opinion with Dr that specializes in CD. I wouldn't delay. Whatever it is, you need to get on appropriate treatment to help prevent further problems. Sounds like you've lived with this situation for too long. Let us know what happens!
Posted 4/21/2008 2:59 AM (GMT 0)
What the hay, I"d ask to be put on Pentasa or Asacol. They are one of the more mild, least risky, meds for Crohn's. I know it would feel better to KNOW what is causing your symptoms but Crohn's can be a real sheister to Dx some times. Especially a rather "mild" case (and symptoms aren't necessarily the criteria for mild, moderate or severe). At least if it is Crohn's the Pentasa or Asacol could help to relieve symptoms and delay a full outbreak of Crohn's damage. If it IS Crohn's it is the DAMAGE the disease can do that you want to get under control or prevent or delay. I know relief of your symptoms is so desirable - but - I'd sure avoid the steroids as much as possible. The long term, hidden, sneaky damage steroids can do are really something you want to avoid as much as possible. Good luck!
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